Writing in The Lancet (subscription required), Kelly Morris says life expectancy for people with Down syndrome has improved dramatically over the past half century, yet research to improve health, cognition and learning among people with Down syndrome has not kept pace. Many in the field say such research has been neglected and underfunded.

Morris says NIH funding for Down syndrome research stands at $17 million this year, down 26 percent from $23 million in 2003. Experts say the NIH is focusing its immediate attention on mouse models, rather than on studying ways to improve the lives and cognitive function of people who have the disorder. “Many would argue that these priorities are the wrong way round,” says Frank Buckley of Down Syndrome Education International.

Writes Morris:

… A shift in focus towards studying variables in people with Down syndrome, especially those that affect learning and cognition, would be most welcome. Such research could also point to differences in the biology of Down syndrome that can promote further useful, straightforward interventions, which is important since specific drug treatment can require years of further investigation.

The article appears in Vol. 372, September 6, 2008.

Minette Marrin, writing in the [UK] Sunday Times, draws a connection between Baroness Warnock, who said people with dementia have a “duty to die”, and Joanne Hill, who drowned her daughter because she was apparently ashamed of the girl’s cerebral palsy.

It ought to be obvious that what Warnock said and what Hill did was wrong and that one leads directly to the other. The thought is father, or rather mother, to the deed. What’s alarming is that Warnock has had official influence on public policy in such matters. All the same, I think there is room for more compassion and careful consideration in both cases.

… Having grown up close to such questions, I’ve come to realize that shame is not only natural but understandable. One feels at a deep level like a failure as a mother or father. Men often feel this much more strongly than mothers and don’t want to be associated with a damaged child. Well-adjusted people are able to put this shame behind them and I think it’s a mark of a good person in a civilized society that she or he can do so. But it may be difficult. A poorly adjusted person may find it impossible.

… None of this makes [Hill] innocent of murder, but it is ground for some compassion and understanding rather than righteous indignation. I suspect the indignation comes from an unwillingness –- an inability -– to confront the inescapable harshness of disability and the painful truth that it is indeed a burden.

See also:

Now our intellectuals think the old and frail have a ‘duty to die’, we are on the path to barbarism, op-ed by Melanie Phillips in the [UK] Sunday Mail

Do the demented have a duty to die? op-ed by Ken Connor on townhall.com. Connor is chairman of the Center for a Just Society

Writing in The Progressive, Kathi Wolfe says people with disabilities want to hear specifics about what candidates are prepared to do to address issues like health care, education, employment, access and technology. Wolfe, who is blind, would like to see the campaigns talk about:

• Assuring health care coverage for people with disabilities,
• Assuring full funding for education for people with disabilities, and
• Removing barriers to employment that leave 70 percent of people with disabilities without jobs.

In this presidential campaign, the candidates have an opportunity to pay more than lip service to our issues. I hope they will seize it.

From the [Portland] Oregonian:

Angela Jarvis-Holland and Abigail Braithwaite say Sarah Palin has boosted the awareness of people with disabilities during this campaign, but bipartisan and community-based efforts are needed to bring about real improvements.

Inclusion is about diversity, and the acknowledgment that this world is made up of people of all abilities, each with unique strengths and interests. When the community takes as a given that people with disabilities are entitled to the same opportunities as every other citizen, then we will have the support we need to bolster the good policy that already exists, and to encourage the people in positions of power to become our friends, to take up the issues that matter to us and create more, better policy in Washington.

So what are we parents asking for? We are asking for everyone — from presidential candidates to our next-door neighbors — to ask yourselves what you are doing to be a friend to people with disabilities.

Jarvis-Holland and Braithwaite are members of the Northwest Down Syndrome Association.

From the New York Times, ‘Lesson Plans’ blog:

Christine Gralow, a pre-school special needs teacher in New York City, says children with disabilities and their families have an especially difficult time dealing with the city’s “culture of cut-throat competition” in kindergarten admissions. She recalls a student whose family had to move out of the city to find an appropriate kindergarten placement for their son, who is on the autism spectrum.

All this is not to say that there are no good public kindergartens in New York City, or no good public kindergarten programs for special needs children. They do exist, and some parents of special-needs kids — those enough lucky to live in one of the city’s coveted public education districts — do find good placements for their kids in well-run team-teaching classrooms, or, when appropriate, in well-run self-contained classrooms. But such placements are few and far between. Even in the coveted districts, I’ve rarely seen an appropriate special-needs kindergarten placement come without a parent struggle.

From the [Portland] Oregonian:

Oregon legislator Sara Gelser, D-Corvallis, says families of people with disabilities struggle every day to keep their heads above water and hold their families together. “They deserve more than Sarah Palin’s empty words, and should not be exploited as pawns in the presidential election,” she says. An excerpt:

Being the parent of a child with Down syndrome does not ensure that Palin will be an effective advocate for people with disabilities, any more than Dick Cheney being the parent of a lesbian daughter has made him an effective advocate for equality. In fact, a McCain/Palin administration will likely set back the cause of people with disabilities to achieve dignity, independence, health and full employment.

… To families of kids with special needs, I have a message: Please look carefully at what candidates up and down the ticket will actually do for your children. Demand more than words and promises. Ask for plans, and see if they match your vision for your child’s future.

Grelser is the mother of a teenager with developmental disabilities.

Writing in NPR’s ‘This I Believe’ section, Penn State University English Professor Gregg Rogers explores his reaction to his daughter’s prenatal diagnosis of Down syndrome. Rogers and his wife were overwhelmed by fear and anxiety at the thought of raising a child with a disability, he says, but were transformed when their daughter Genevieve burst into their lives.

I now believe Genevieve is here for everyone. I believe Genevieve is taking over the world, one heart at a time — beginning with mine. I believe that what was once our perceived damnation has now become our unexpected salvation.

… On my right wrist, I wear a simple silver chain with three little beads on it. I used to say the three beads signified the third chromosome that results in trisomy 21, Down syndrome. Now when I look at those beads, they simply remind me that I don’t ever know as much as I think I do, but I’m always capable of more than I think I am.

Rogers and his wife Lucy host a website for other families in their area who have children with Down syndrome.